Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 > along with with what you are tring I started taking fenigreek herbs, and fish oil and am bake to normal levels on all > > Date: 2006/02/04 Sat PM 02:52:40 CST > To: diabetes > Subject: Newly Diagnosed > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 This is the course my doctor took with me. I was diagnosed almost 1 1/2 years ago. At the time my A1C was 6.5. I needed to lose 10 pounds, so that is the first thing my doctor said to do. He did not prescribe any meds. for me. Instead he said to try to control it with diet and exercise to see how it goes. I've managed to stay off the meds. up to this point. It's not always easy, though. Sometimes it seems like it's getting harder and harder. My A1C's always stays in the 6's, but now he wants it below 6.0. I had an appointment with the doctor last week, and even though my A1C is still in the 6's, he did say I would probably have to go on medication soon, and that it didn't mean I was a failure. It seems as if each doctor is different in what they prescribe at first, whether it be diet and exercise or medication. Good luck. Take care, In a message dated 2/2/2006 12:52:35 P.M. Eastern Standard Time, ershively@... writes: Is the usual practice these days to let the patient try to control this through diet and exercise first? I am about 20 pounds overweight and am 56 years old. --------------------------------- Yahoo! Mail - Helps protect you from nasty viruses. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 This is the course my doctor took with me. I was diagnosed almost 1 1/2 years ago. At the time my A1C was 6.5. I needed to lose 10 pounds, so that is the first thing my doctor said to do. He did not prescribe any meds. for me. Instead he said to try to control it with diet and exercise to see how it goes. I've managed to stay off the meds. up to this point. It's not always easy, though. Sometimes it seems like it's getting harder and harder. My A1C's always stays in the 6's, but now he wants it below 6.0. I had an appointment with the doctor last week, and even though my A1C is still in the 6's, he did say I would probably have to go on medication soon, and that it didn't mean I was a failure. It seems as if each doctor is different in what they prescribe at first, whether it be diet and exercise or medication. Good luck. Take care, In a message dated 2/2/2006 12:52:35 P.M. Eastern Standard Time, ershively@... writes: Is the usual practice these days to let the patient try to control this through diet and exercise first? I am about 20 pounds overweight and am 56 years old. --------------------------------- Yahoo! Mail - Helps protect you from nasty viruses. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 This is the course my doctor took with me. I was diagnosed almost 1 1/2 years ago. At the time my A1C was 6.5. I needed to lose 10 pounds, so that is the first thing my doctor said to do. He did not prescribe any meds. for me. Instead he said to try to control it with diet and exercise to see how it goes. I've managed to stay off the meds. up to this point. It's not always easy, though. Sometimes it seems like it's getting harder and harder. My A1C's always stays in the 6's, but now he wants it below 6.0. I had an appointment with the doctor last week, and even though my A1C is still in the 6's, he did say I would probably have to go on medication soon, and that it didn't mean I was a failure. It seems as if each doctor is different in what they prescribe at first, whether it be diet and exercise or medication. Good luck. Take care, In a message dated 2/2/2006 12:52:35 P.M. Eastern Standard Time, ershively@... writes: Is the usual practice these days to let the patient try to control this through diet and exercise first? I am about 20 pounds overweight and am 56 years old. --------------------------------- Yahoo! Mail - Helps protect you from nasty viruses. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 > > This is the course my doctor took with me. I was diagnosed almost 1 1/2 years ago. At the time my A1C was 6.5. I needed to lose 10 pounds, so that is the first thing my doctor said to do. He did not prescribe any meds. for me. Instead he said to try to control it with diet and exercise to see how it goes. > > It seems as if each doctor is different in what they prescribe at first, whether it be diet and exercise or medication. > I think it is much more that every patient is different rather than doctors being so different in what they prescribe at first. Yes, some doctors or different, but most follow pretty standard guidelines. The patient who presents with a 400 blood sugar and an A1c of 12 needs to be started on medication along with diet and exercise. Someone with blood sugars under 200 and an A1c of 6.5 can be tried on diet and exercise without any medication. The patient with the 400 sugar needs it lowered quickly, and is unlikely to be able to be treated with diet alone. The patient with sugars under 200 is in no immediate danger, and is fairly likely to be controllable without medication. Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 > > This is the course my doctor took with me. I was diagnosed almost 1 1/2 years ago. At the time my A1C was 6.5. I needed to lose 10 pounds, so that is the first thing my doctor said to do. He did not prescribe any meds. for me. Instead he said to try to control it with diet and exercise to see how it goes. > > It seems as if each doctor is different in what they prescribe at first, whether it be diet and exercise or medication. > I think it is much more that every patient is different rather than doctors being so different in what they prescribe at first. Yes, some doctors or different, but most follow pretty standard guidelines. The patient who presents with a 400 blood sugar and an A1c of 12 needs to be started on medication along with diet and exercise. Someone with blood sugars under 200 and an A1c of 6.5 can be tried on diet and exercise without any medication. The patient with the 400 sugar needs it lowered quickly, and is unlikely to be able to be treated with diet alone. The patient with sugars under 200 is in no immediate danger, and is fairly likely to be controllable without medication. Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 > > This is the course my doctor took with me. I was diagnosed almost 1 1/2 years ago. At the time my A1C was 6.5. I needed to lose 10 pounds, so that is the first thing my doctor said to do. He did not prescribe any meds. for me. Instead he said to try to control it with diet and exercise to see how it goes. > > It seems as if each doctor is different in what they prescribe at first, whether it be diet and exercise or medication. > I think it is much more that every patient is different rather than doctors being so different in what they prescribe at first. Yes, some doctors or different, but most follow pretty standard guidelines. The patient who presents with a 400 blood sugar and an A1c of 12 needs to be started on medication along with diet and exercise. Someone with blood sugars under 200 and an A1c of 6.5 can be tried on diet and exercise without any medication. The patient with the 400 sugar needs it lowered quickly, and is unlikely to be able to be treated with diet alone. The patient with sugars under 200 is in no immediate danger, and is fairly likely to be controllable without medication. Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 My husband is 34 and has had UC for 16 years, which has been well controlled. He was just diagnosed with PSC, after having " attacks " after having his gall bladder removed and elevated liver enzymes. So much of what I have read on the internet says he will die in 10 years without a liver transplant. Is this accurate? Have we received a death sentence? Or can people live for years with this? Is it difficult to receive a liver for transplant? How long do most people have to wait? He has been prescribed Actigall. Is that common? We live in the Chicagoland area and I want to be sure to find a doctor that knows how to treat this disease, does anyone have any suggestions? We have too small children and I guess I am feeling overwhelmed. Thanks for any information you can provide. Take care Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Tammy: It does feel like a death sentence. That is how I felt when I was diagnosed. That was in 2001. I went to the doctor and said the same things that you have.................... " Am I going to die in 10 years? " . He said that that is just statisics and that every case of PSC is different. I have had no problems with my liver. I do have problems with Crohn's but they are controlled. I work full-time. I go to school part time. I am a single parent and have 3 foster children (ages 2, 4 and 17). Your world will change with this diagnosis but it doesn't have to stop. People can lives for years and years and years with this stuff. Take a deep breath and take this one day at a time. I can't help very much with the liver transplant questions but there are lots of people that belong to this support group that can help. I take Urso but I believe Actigall is prescribed just has much. Hope this helps. PSC '01 >>> " trinaldi1 " 4/17/2007 7:25 AM >>> My husband is 34 and has had UC for 16 years, which has been well controlled. He was just diagnosed with PSC, after having " attacks " after having his gall bladder removed and elevated liver enzymes. So much of what I have read on the internet says he will die in 10 years without a liver transplant. Is this accurate? Have we received a death sentence? Or can people live for years with this? Is it difficult to receive a liver for transplant? How long do most people have to wait? He has been prescribed Actigall. Is that common? We live in the Chicagoland area and I want to be sure to find a doctor that knows how to treat this disease, does anyone have any suggestions? We have too small children and I guess I am feeling overwhelmed. Thanks for any information you can provide. Take care Tammy =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Tammy, Discovering you or your partner has PSC is a VERY scary thing. However you have found a GREAT place for support. Everyone here has a different story of how PSC reacts and has affected their lives. For us... my husband is almost 35 and is 3.5 months post transplant. He is doing very well and is back at work part time. We have two small boys 3 and 6, so I do understand the fear. Man did I FREAK OUT two years ago when his PSC became active. He has know he had PSC for 10 years before that but the doctors at the time did not treat or explain his condition other than he might need a liver transplant someday. Gotta love the VA... another story all together. Basically... PSC does not have to be a death sentance. You are in a large city that will have doctors that specialize in PSC. I would research and find a good hepatologist. As far as the actical/usro yup common it thins out the bile so it passes through the bile ducts that may be narrow. I could go on and on about the whole thing but it could overwhelm you more and who needs that. If you are interested my husband has been bloggin his process at www.delivermyliver.com Yes, he has a warped sence of humor, but hey keeps him sane. Also feel free to contact me directly if you need support or a place to vent. Litsa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi Tammy, Your story sounds just like mine (I'm 37). I was diagnosis with PSC back two years ago. My wife and I had the same questions and sense of doom. To make matters worse, I had a few " attacks " during the 1st 6 months where I had a lot of back pain and had to go to the ER. After having an ERCP procedure - that cleaned out blockages in the bile ducts, I've been asymptomatic since Dec. 2005. I even saw my Hep. Doctor at town U. Hospital who said the disease was in a holding stage. I guess what I mean to say, is that my wife and I were very worried at first and thought it was a death sentence, but since it is so unpredictable, you never know. Even when there are bad days (like a year and a half ago for me) they could be followed by great days, months and years. I know that someday I'll need a transplant, but even then, with the advances in science, one never knows for sure. Learn about the disease, support eachother, but try not to let it take over your lives! Washington, DC (Former Chicagoan!) > > My husband is 34 and has had UC for 16 years, which has been well > controlled. He was just diagnosed with PSC, after having " attacks " > after having his gall bladder removed and elevated liver enzymes. > > So much of what I have read on the internet says he will die in 10 > years without a liver transplant. Is this accurate? Have we > received a death sentence? Or can people live for years with this? > > Is it difficult to receive a liver for transplant? How long do most > people have to wait? > > He has been prescribed Actigall. Is that common? > > We live in the Chicagoland area and I want to be sure to find a > doctor that knows how to treat this disease, does anyone have any > suggestions? > > We have too small children and I guess I am feeling overwhelmed. > > Thanks for any information you can provide. > Take care > Tammy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Tammy-Welcome to the group. I am sorry for your husbands dx. You have found a wonderful group of people with a wealth of information and support for both you and your husband.PSC affects everyone differently. Your husband can go years without any symptoms, or just rarely have them. My brother was dx in 2001. We are just now in the process of listing for transplant. However, there are people on this group that have lived 20+ years with PSC and are realitively symptom free Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 >I am part of the silent majority that reads the post on occasion but rarely post, but today I am compelled to shed some light on some of the statistics that keep being recited in this thread. Yes, it is true that the average time from diagnosis to transplant is 10 years, but what isn't quoted is that only 30-40% of PSC patients will ever need a transplant. Therefore, that means 60-70% of us will never have to get a liver transplant, so it is all on how you look at the numbers! Additionally, only 15% of patients will contract CC, so on the reverse side of the coin that translates to 85% will never contract CC. I remember someone posted a doctors quote that stated " Most of us will die with PSC not from PSC " . I have been to several Hepatologist who all said that only 30-40% of PSC patients will ever need a liver transplant. I have seen postings from Ivor and others who confirmed what I have been told by various Hepatologist, so if you're going to quote statistics then you should provide the whole picture. If you want to impart optimism why not provide this information to the new posters? If you think that you're destined for liver transplant just because you have PSC your thought process and deductive reasoning is erroneous, and your defeatist attitude will fulfill your self fulfilling prophecy. The mind and body connection is a powerful tool, so why not use it to your own advantage and focus on the positive. I have responded exceptionally well to the high dose URSO, and I am asymptomatic and have completely normal LFT. All of my doctors are extremely impressed by my response to URSO and my physical condition. I exercise on a regular basis (lift weights 3 times a week and run 5 miles twice a week) so if by chance I ever do need a liver transplant my body will be in excellent condition to recover from the surgery. I believe if I challenge my body with exercise on a regular basis it will be prepared to recover from surgery with fewer complications, but I firmly believe that I will never need a liver transplant. Although, I do know I will encounter other medical issues as I get older it is evitable, so I believe in keeping my body fit and it will keep me alive longer. I believe in having my body prepared for every possibility, but I keep my mind focused on the positive. Even if you have to get a liver transplant the odds are in your favor, because over 2/3 of people that need a liver transplant get one. If you get a liver transplant the 5 year survival rate is around 80%, so the odds are greatly in all of our favor that most likely you will not die from PSC but from something else. I once posted PSC will just be an inconvenience to me, but it will not affect the longevity of my life. I will fulfill my goal to live well past 80 years old, and hopefully die in some sort of freak sexual act with my very hot wife. Therefore, if you are compelled to give statistics and want to foster hope in the newbie's, why not quote to them the entire picture, because the entire picture isn't very bleak at all but encouraging and hopeful. You have more to look forward to because the odds are in your favor, so go forth and live your life and just monitor your body but live life! Most likely your will be around for a lot longer than 10 years, and you will not ever need a liver transplant. Marc (PSC 4/05) > Hello Everyone, My name is Ike and I was just diagnosed PSC. I am in > my 25th year with Crohn's Disease. I had two surgeries last year that > where Crohn's related. During pre-surgical testing they found that my > liver fundtions were seriously out of wack. After several tests and a > liver biopsy I was given the news that I had another disease to deal > with. I hope I can come to you with what may seem to be stupid > questions. I am learning about PSC but have alot to learn. Take > Care, Ike > Quote Link to comment Share on other sites More sharing options...
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